Carole…

…speaking through art, poetry and humour…oh and politics too!

Following on…

Carole

Following on from yesterday’s blog where my husband Clive recounted his experiences of being bedbound, I’d like to talk a little about how being housebound affects me.

I’ve had M.E. for almost 15 years now, It came upon me very quickly after my husband and I went through our second attempt at ICSI…specialied IVF. I’d had Glandular Fever a few months before but I remember recovering from that quite well. It wasn’t until the drugs regime in our 2nd of three attempts that I noticed how ill I was becoming.

It’s actually a bit of a blur that first year. I know I spent short periods in bed sleeping for up to 23 hours a day. I don’t really know how we coped through that and why we weren’t more alarmed by this sudden change in fitness and health in me. I think we just muddled through.

My symptoms would come and go almost as if they followed my hormone changes but steadily they got more sporadic and less controllable and even more difficult to hide from those around me.

Back then I was very active, not sporty in any way but very close to nature and outside doing ‘stuff’ every chance I could get. That changed overnight. I had to really pace myself to be able to do what needed doing nevermind the fun stuff.

For a good time I was well again and thought it had all gone away, I think for perhaps at least a year in which time I ploughed myself into helping with a local ME charity and setting up two support groups in local towns.Then it all came back with a vengeance and I haven’t really recovered since.

During all these years I have only claimed DLA once…that was five years ago. I was refused and it went to tribunal. I can honestly say that experience was horrific. I never want to to repeat the feeling of inadequacy I felt during that process…the three people involved belittled me and if I’m honest abused their position of power. I was however awarded low rate care. When the renewal date came I didn’t reapply…the whole experience had scared me so much and the stress caused untold months of relapse for me.

I then developed cancer, I won’t go into this too deeply except to say I lost my womb and along with it a little of my soul. That was three years ago. My gynaecologist was excellent as were every member of staff on the ward I was treated at. But since then I have gone downhill even more so to the point I leave the house less than ten times a month…sometimes much less or never.

This has a huge impact upon my life. Every little chore or activity, even if it’s fun and makes me happy has to be weighed up as to whether it’s worth the payback and the flaring of multiple symptoms I have with overdoing it. This can be a simple as sleeping for hours or as bad as incredible overwhelming weakness and exhaustion, nausea, immune responses, headaches, sleeplessness, neuropathic, joint, muscular and chest pains. A multitude more including tinnitus and feeling foggy headed and confused. Not to mention the emotional effects that M.E. has upon me. I can have an over-reaction to the most everyday things and it all becomes overwhelming for me.

I tend to live my life online these days. I speak on the phone to a few dear friends. I keep in touch with my parents daily. I bear a lot of guilt that because of my own disability I am no longer able to help them the way a daughter would normally do so. I try hard to be there for them in a supportive capacity now that I can’t physically help out.

I’m lucky I am creative…during good spells I have a number of crafts I enjoy. That helps my soul to be able to express myself that way. Otherwise it’s mostly reading and often campaigning for awareness and treatment on social media sites.

I feel lucky that I have the ability to do all I can still. So many of my friends can do much less than I and I fight for them as well as myself really…I tell my story so that those who have no voice and no means of telling how bad being affected by ME is to those who need to hear it.

Lastly I am going to apply for DLA again…I gathered some courage together and the form is sat by my bed. I have another two weeks to return it. Everything the Government is doing right now against the sick, disabled, poor, elderly and most vulnerable in society sickens me to the core. I write this so that it raises awareness of invisible illness and also to help Liz Crow and her Bedding Out art activism campaign to highlight how the Welfare Reforms are affecting so many thousands of people in the UK.

I have a voice and I am using it. 🙂

http://www.roaring-girl.co.uk/

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Written by carolecarrick

March 28, 2013 at 4:18 pm

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